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Thread: Uribel??????

  1. #1
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    Question Uribel??????

    My uro just prescribed me uribel to help with pain, burning and frequency associated with my still undiagnosed pelvic pain ( a cysto was done two days ago, and bladder looks normal)..

    I was just wondering if anyone has tried it and had any success from it?

  2. #2
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    I never heard of it. Do you think he said "Urelle" instead? That is a very well known bladder product.

  3. #3
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    Uribel or Urelle

    Uribel is a new med that has only been on the market since August of this year -- my doctor gave me some samples and it works great for me in stopping the pain! However, it is costly but it's somewhat less expensive than Urelle (under my insurance plan anyway). I've not tried Urelle yet so I don't know which works better. Good luck!

  4. #4
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    Uribel is working great for me but it is indeed expensive. I find that it works better that prosed DS and azo. I take it daily but plan on weening myself off it to see if my bladder has improved some with the diet. On it I am only going once every few hours and have minimal pain! Hopefully I won't need it for too much longer.

  5. #5
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    I got some of this, too, and it does help with active pain. It sort of made my bladder feel numb, though, which led to a fairly weird feeling in my abdomen. It was sort of like having no pain but knowing something was still wrong in there.

    My urologist gave me a coupon that discounts the cost of an Rx by up to $40. You can get the coupon online at the Mission Pharm website that's good for the next 12 refills. Just beware, they will only let you use the coupon ONCE A MONTH, so make sure your Rx is for enough capsules to get you through that long. The customer help line representative told me that even though it's not on the coupon, those are the rules. She mentioned that I could get a 2nd coupon and get the Rx filled at a different pharmacy if I didn't want to wait.

    The coupon is here:
    https://www.altsampling.com/1068064/default.aspx

    -Otter

  6. #6
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    uribel

    My uro prescribed Uribel for me also at my last visit. Regarding the coupon; I don't think it is valid if you are on medicare or have insurance. I could be wrong but I think it is for hardship cases.
    Please tell me I am wrong though. lol

  7. #7
    ICN Member Briza's Avatar
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    Quote Originally Posted by fmcbride View Post
    My uro prescribed Uribel for me also at my last visit. Regarding the coupon; I don't think it is valid if you are on medicare or have insurance. I could be wrong but I think it is for hardship cases.
    Please tell me I am wrong though. lol
    I've found that some drug coupons aren't valid for people who have health benefits through state employment but are good with other insurance plans. No harm in checking! You might find that you do qualify. And then there have been some I've qualified for even with state insurance.
    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn

    I've been remission since Aug 2009! My apologies but I will no longer respond to private messages regarding my IC and VV symptoms, diagnosis, treatments, remission, lifestyle changes including my diet or stress management techniques, etc. I am simply too busy. If you have questions please refer to my remission thread as well as the other 6000 something posts I have made on this board....they pretty much cover it all from beginning to end.

    My remission story: Healing from the Inside Out
    http://www.ic-network.com/forum/showthread.php?75536-My-remission-healing-from-the-inside-out
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"

  8. #8
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    Hi

    So happy to see you are in remission.
    Can you tell me if you take medication every day? Are you following the alkaline diet?
    I have all of those symptoms - burning, bloated , spasms, and it is ruining my life and my children's.... Any suggestions are appreciated.

    Mandy

  9. #9
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    Quote Originally Posted by Mearle View Post
    Hi

    So happy to see you are in remission.
    Can you tell me if you take medication every day? Are you following the alkaline diet?
    I have all of those symptoms - burning, bloated , spasms, and it is ruining my life and my children's.... Any suggestions are appreciated.

    Mandy
    Hi, Mandy. I haven't posted in ages -- things got way more complicated since I was first looking to the network for support -- but I didn't want you to think nobody was here in the thread. Thankfully, I'd subscribed.

    When I was first diagnosed, I followed the diet VERY strictly. It helped a LOT. I also took Elmiron, amitriptylene, and hydroxyzine in combination, every day. This trio with the diet put me, essentially, into remission. I was able to break the food rules occasionally (stuff like dry BBQ spices, or a tiny bit of sauce; ketchup; occasional spicy foods). That kept me in good shape, without daily pain, for about 3 years.

    Since then, I also developed IBS, which is common for IC patients. The low pelvic pain was back, but it wasn't the same as "plain" IC. I stopped taking the Elmiron (it was making my IBS worse). I cut gluten, dairy, egg, nuts, soy, and gelatin from my diet. It took another few months for that to all calm down. I've had to stick with excluding everything but soy (in moderate amounts), as well as maintaining the IC-friendly diet.

    I started doing bladder instillations weekly with heparin and Elmiron instead of elmiron orally. Between that, the diet changes, and maintaining my amitryptylene and hydroxyzine daily meds, that I'm back to mostly pain-free days.

    I also found a set of stretches and exercises in a book called "Heal Pelvic Pain" to be very helpful in alleviating pain. I still do those stretches when I have a flare or eat/drink something naughty.

    The most important thing is that you are VERY strict with the diet restrictions and VERY good about taking your meds when you're first diagnosed/suffering. If you're not, things will not calm down, and (in my experience) you'll get worse with each rule-breaking.

    Hang in there! There's a ton of good advice in the forums. My best advice is to start off really strict and do as much as you possibly can to avoid trigger foods, etc.. Then you'll have to experiment to see what works for you. We all have individual variations. (For example, I can tolerate some wine with -minimal- discomfort for example, and that's usually a HUGE no-no for IC folks.)

  10. #10
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    Thank you for responding!
    It is a relief to know that I am not the only person who is suffering...Sometimes you can feel hopeless and alone.

    I haven't been able to work or look after my kids and that is really bothering me..wasn't depressed or stressed until this.

    I think I will purchase the book you suggested as the stretches would really help my abdomen/pelvic area which is either in pain or bloated!

    Are you able to do regular exercise and work while taking the meds? Do the bladder installations hurt? I have read they can be really good to calm the flares...

  11. #11
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    Quote Originally Posted by Mearle View Post
    Thank you for responding!
    It is a relief to know that I am not the only person who is suffering...Sometimes you can feel hopeless and alone.

    I haven't been able to work or look after my kids and that is really bothering me..wasn't depressed or stressed until this.

    I think I will purchase the book you suggested as the stretches would really help my abdomen/pelvic area which is either in pain or bloated!

    Are you able to do regular exercise and work while taking the meds? Do the bladder installations hurt? I have read they can be really good to calm the flares...
    You're totally not alone! Tons of folks here on the forum more regularly than me to lend support. I'm happy to help where I can!

    I do work a fairly physical job (veterinarian) without pain or difficulty. The first night I took the meds, I was able to sleep for the first time in about 2 months. I generally have good sleep, no pain, and a normal life. The food restrictions make eating out or traveling more difficult, but I still do both.

    The bladder instillations aren't' painful once they're in. The self-catheterization is a little uncomfortable for me. I'm not sure if it's better or worse for women. As a guy, running a tube up the plumbing is something I will NOT DO without numbing jelly (lidocaine jelly). It only takes me about 15 minutes start to finish, but I've got a pretty elaborate system to keep things clean and almost sterile so I don't get a UTI.

    I'd recommend the Elmiron as a first choice if you have the chance and can avoid the side-effects (which go away when you stop the meds). My first few years on Elmiron were the best.

    If your urologist or doctor isn't addressing your pain, you should tell him/her so. If you're blown off, find another doctor. Nobody deserves to suffer because "it's not that bad." Frankly, it doesn't matter what everyone else's pain is. What matters is YOUR pain and how THEY can help YOU address it so you can have your life back!

    -Otter

  12. #12
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    That was my exact statement to my GP - I need my life back and my children need me.
    After taking the Elmiron for a while did it eventually stop working? I think you said you tried it again and it didn't do the job like before??

    I live in Canada and even getting an appt with a urologist is an incredibly slow/long process.

  13. #13
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    Quote Originally Posted by Mearle View Post
    That was my exact statement to my GP - I need my life back and my children need me.
    After taking the Elmiron for a while did it eventually stop working? I think you said you tried it again and it didn't do the job like before??

    I live in Canada and even getting an appt with a urologist is an incredibly slow/long process.
    I ended up having a ton of gastrointestinal issues crop up, too. Apparently it's common in IC patients. :P I was concerned that the Elmiron was part of the problem. Even if that's true, I wouldn't trade the 3 years or so I had while taking it. It was a nearly-normal life! Just educate yourself about the possible risk (small and reversible) against the benefit (being able to sneak "no!" foods occasionally and pain-free days.)

    Now I use Elmiron in my bladder instillations along with Heparin. I dump a few capsules of Elmiron into the solution that I put into my bladder.

    Some people on the forums have had great success with Desert Harvest Aloe Vera powder. It's expensive, but some find it better than Elmiron. I never bothered to try it once the bladder instillations started working well enough.

    Sorry to hear that getting a referral to a specialist is so slow in Canada. It took me 2 months of messing around with my GP before I got a good solid diagnosis from the urologist. Not fun. But things did get better!

  14. #14
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    Otter and others, your courage inspires me!!! I have been doing "natural" instillations in office. They have aloe, lidocaine and sodium bicarbonate. Unfortunately, these brought on a full flare with burning, frequency, and awful abdominal swelling. Does the swelling ever go down? A few months ago, I was at goal weight and facing a bright future! I went off Detrol (hate side effects) during the instills and went into a full blown flare. The only thing that helps is pyridium. If I could take it every day, I would, but am afraid to use long term. I will ask about Uribelle. I am struggling with the diet but am trying to strictly adhere to it. This disease is truly awful! Love to all of you who suffer. You are heroes to me. Anyone else whom the instills have caused flares?

  15. #15
    Forum Manager ICNDonna's Avatar
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    It's not unusual for an instillation to cause a flare, but the flare usually will go away quickly.

    The diet is well worth the effort. It's easier for me when I do some meal planning. And I keep the food list handy so I can check out anything new.

    When you think about a food you'd really like --- and it's on the "Caution" list --- try thinking of it the same as you would a hot stove burner. You wouldn't intentionally put your hand on the burner because you know it will cause pain --- why then would you eat something, knowing that it will also cause pain? It just isn't worth it.


    Donna
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